I also posted this to the Lupus board but thought someone here may have some knowledge as to this as I do have both Luppus and Fibromyalgia:

I have been diagnosed about 7 years with combo Lupus and Fibromyalgia and been under a Rheumatologists' care. This latest flare (previous have all been muscular or skin related) is making life really difficult. I have had times with hip and lower extremities having stiffness, aching, deep burning pain that would make mobility difficult. This flare is so different as it seems that the pain is bone related. It is deep throbbing non-stop from my hips to my toes. It feels like the pain of the worst toothache one could have. I actually had a jaw bone related pain just days before this onset of leg pain. It is so different from the muscular pain I have had in the past that I have had to take pain med round the clock for the last two weeks, which is very unusual for me. I have an appointment in Jan to return to Rheumatologist. I don't think this is weather related as it has been relatively mild here so far this fall. Nor is it activity related. I was hoping someone with Lupus / Fibromyalgia or a combo of the two may have some knowledge of this type of symptom. I do hope it is through your research and not firsthand knowledge. Any replies or home remedies will be appreciated.

hiya goldy,
long time since i spoke last with you. i have a few tricks i use. i have an agressive case of sjogrens and fibro. my joints are very much affected by the sjogrens. i have several topical creams and jels for discomfort that i use. bio freeze and sombra work great but make me cold so i have a 20 min. moment in hades till the cold stops then relief for hours. the noxicare cream is great, no smell but it does stain even tho they say it does not. it does. my toilet seat shows it! a strange shade of yellow green. giggle. but it works so i use it. no cold sensations just relief. also pain a trate, it stinks but works great and makes my skin really warm if i put in on fresh out of the shower.
all of them i use like lotions. all over my body. the noxicare is for soft tissue, bone, muscle and tendon pain.
also ask your doc for a referral to be fitted with arthritis warmers at a p.t. office. they make them for ankles, knees, wrists and elbows. they are soft and warm, never can see them under even the tightest jeans.
for myself i have found taking 2mg of prednisone a day does help the aspects of sjogrens to ease off and slow down. i know it is also used for lupus.
i also have a hot tub for the really rough days. in winter it is a sanity saver for sure! even hot baths help. remember, exercise is important. i do make myself take short walks many times a day. our winter is hitting us hard and cold. normal for us. glad your slice of earth is being easy on you.
peace,
blue

__________________
when faced with something you cannot control peace lies in self education and adaptation to the situation.

hey sister blue!, the sombra you use is the cool one. Have you tried the warm one? I'm seeking an alternative to my Dremu oil that is just a little less expensive. I have found bio freeze does nothing for me and the dremu does. So I'm thinking i respond to the warming gels and lotions better.

Goldy, I've been using an emu based oil called DREMu pain relief formula. it works well for me but it's mucho$$$. Being an oil it does go farther than a oinment or lotion. Give it a google. I also get bone pain, mostly in my legs and it's kind of piercing at times.

Hi again my friend. I was wondering if the lotions you mentioned are prescription or over the counter. I have used Biofreeze for several years now and it does help with the muscular pain but had little effect on what has been going on lately. Also use Lidoderm patches but they give minimal relief as well. Seems they have little effect on this type of flare pain. I have pretty much just laid around the last couple of weeks on top of pillows and heating pads due to the excruciating pain. It feels like daggers in my bones of my feet when I try to walk so exercise is pretty much out of the question right now although it is a little less painful yesterday than before so hoping this was just a new kind of flare and is finally subsiding. I know that this wide array of symptoms we have is so peculiar. One minute you can feel fine and the next you feel like you are dying. I do have labs suggestive of sjogrens and have had some eye issues of late that I contributed to that. On drops for that now.

Getting in the tub seems to help some temporarily, used a couple of bags of epsom salts this go round/ Just hard to get in and out when it is like this. Do wish I had a hot tub as it would probably help even more to be able to stay in a little longer and at will. I know I soaked 3 times a day for several days just to get comfortable. Oh well..

Thanks for the suggestions and will look for your reply on the lotions. Hope you are doing well.

hiya goldy,
they are all over the counter so to speak. i order them online at amazon and if they are out i go to the company itself. the sombra warm is not warm name sister! at least not on me. for myself i feel the best one is the noxicare, of course, the most expensive of them all and the one that stains my clothing. cloths i can replace. not my body.
goldy either you have sjogrens or you don't. there is a very specific blood test for that and i would ask for it asap. what you read online about this disease of the immune system makes it sound so non-invasive. when you look closer and type in sjogrens and the say, liver or kidney or joints it's a whole different ball game.
tho there is not much one can do with sjogrens at least it is for most a slow process. i have already said goodbye to my eyes, got implants when cataracts hit fast and hard. lost all my teeth too. love my pretty fake smile. giggle. most of the hair on my body is gone. i shave my head. don't have to shave legs or pits anymore. no hair. no pubic hair either.
with lupus it's really a good idea to make sure just who is playing in your body. we tend to dump things in the oh, it's just fibro bucket.
are you on steroids or other immunosuppressants? amazingly enough 2mg of prednisone seems to take the edge off my joints. tried the eyes drops, restasis, allergic.
for all over and specific joint pain i think perhaps the best first investment would be the noxicare stuff.
wish i could send you my hot tub goldy. i really would share with you, anytime!
remember to move around at least a bit. do not let those joints freeze up on you. that really hurts and yes, giggle, i speak from experience. tee hee.
peace,
blue

__________________
when faced with something you cannot control peace lies in self education and adaptation to the situation.

Blue, I think he just added sjogrens based on labs and symptoms without pursuing it individually. I can tell you I have had the driest of lips, mouth, eyes, skin, hair all my life and my fingers and feet hurt in cold (weather or room air) and always have. I was on plaquenil but I gave it up as I was having such extreme light sensitivity (have not told Rheumie) that it requires me to wear shades to look at computer screen, watch tv and I blind easily just going from one lighted source to another. Last report from eye doctor was everything was okay tho. So I took it on myself to try leaving off the med to see if it made a difference and it has. I will probably come clean in Jan when I see him.

I too have noticed hair loss, not just on head but eyelashes. and body hair. I rarely have to shave either now. I did the frozen shoulder thing twice already so I understand that problem.

Doctor was unable to draw blood last time he attempted. May be why he has not followed up. I am stingy when it comes to blood draws. I think they just did not want to stick me again. Protocol thingy! I too have lost several teeth in last few years, had to go for periodontal laser surgery and noticed that the lights there in the dentist chair would literally make me sick. I usually have to have them blindfold me for procedures now. I get sick in Walmart or any large store with lots of flourescents. I am now a person on a mission trying to get in and out quickly.

Well thanks for the info. I do hope you are doing as well as possible..

dang girlfriend,
so very sorry to hear you are on this path too. get that blood work done. unfortunate that the only drugs to help us are immunosuppressants. i can't take plaquenil either. or methotrexate. i do okay on the 2mg of prednisone.
i have pretty much decide to let nature take her course as much as possible considering the levels of discomfort. i am a high candidate for lymphoma and honestly don't give a rats fanny about it. if it comes it comes and i will think on it then.
i do have a woman who makes my soaps and lotions and lip gloss. other than that i just have a very expensive eye drop addiction. giggle. generics don't work for me.
i found a chiro who does this pushing thing on each side of my spine all the way up and down. somehow it relaxes the tissue and i have less shoulder and neck, back and hip discomfort. he calls it spreading the spine out.
curious to know what your eye doc says about your light sensitivity?? is that doc an opthamologist? best to have one of those instead of an optomitrist. i was light sensitive before the surgery and more so now. that was an expected tho.
your other doctors need to know if you have sjogrens along with fibro and lupus. as far as i know the problems are related to sjogrens not fibro or lupus, tho they have similar symptoms. personally i think there are more of us out there than we realize and many go all their life wondering why they are falling apart. same with fibro.
it's a trippy life that's for sure. my eyebrows and lashes are mostly gone now too. giggle. what a trip the body is.
peace,
blue

__________________
when faced with something you cannot control peace lies in self education and adaptation to the situation.

Hi goldy, coming a little late to the party here, but wanted to offer my support. I have the mostly waist down bone pain and burning pain. Had them so bad the other day, I just had to take extra meds and grin and bear it. This is normal for me though, so I think I built up a better mind set when it hits so hard.
My way of dealing with it, is more prednisone, Ibuprofen and covering up and getting warm. I need the warmth to give me that extra push to tolerance. I use extra covers in bed to give me the weight and warmth to help me wake up feeling better. Even in the summer if I need it. I know a lot of people with fibro don't like the weight of covers, but that doesn't bother me, I need the warmth.
I also have the raynauds, the cold hands and feet that turn red and kind of blue and purple and just hurt like a....well insert a word or two.....'cause the pain is excruciating. Joint pain is my constant companion and this year seems worse, especially this fall. We haven't had horrible weather, some has actually been wonderful for this time of year. However it is this in between weather that makes my joints hurt worse. For some reason when the weather gets downright cold, I do better with the pain. I think because the heat is turned up and I dress warmer even indoors and the barometric pressure doesn't fluctuate as much. I have always said that I have more pain in summer with the a/c than in winter. I think I am the only person who takes sweaters and jackets off to go outdoors in summer and puts them on when I come inside.
I have those sharp shooting bone pains in other parts of my body also. My jaws and shoulders especially and sometimes down my arms, but they don't seem to last as long if they are really sharp, or are not as sharp if they last a little longer. Don't ask me why.

Thanks Glojer. The last couple of days I have had a horrible pain in Left lower abdomen that goes through to back and in shoulder and arm. I mean horrible pain, so severe that I called daughter (try not to complain to family) in case I had to go to ER as the tramadol and wrapping in heating pad just was not touching the pain. Finally went to sleep and this am the pain is mysteriously gone. I just don't understand how one can feel like you are dying one minute and next day pain is gone. This is so maddening. I was in grocery store on Tuesday and felt fine until about ready for check out and it hit me and I thought I was going to collapse before I could get to the car. It really is scary to have these attacks and living all alone. Makes me wonder just how long it might be before someone would discover I had gone on to the next place if I were to die. LOL Well I just hope my next doctor visit will shed some light on what is going on here.

hi goldy,
those types of pains blow my mind too. i often get hit while out alone and yes it is scary. i just focus on getting thru the line, then getting to the car, then getting home. one step at a time instead of seeing the whole picture helps me make each next step. hope that makes sense. been doing it for years and so far i'm accident free. giggle.
try to remember each time that it has happened before and it went away. i do hope your doctor does the testing to prove one way or the other about sjogrens. it's not a throw out there diagnosis. nor is it a condition you can ignore.
i just got into my pain mgmt doc yesterday. next month we do injections, yipeeee!!!! they do help me much better than any pills. so glad to be back on track with her. she move offices 2 times in less than a year so i just waited for the dust to settle. giggle.
keeping my fingers crossed for you.
peace,
blue

__________________
when faced with something you cannot control peace lies in self education and adaptation to the situation.

Hi goldy and blue! Been kind of.....well.....I guess you could say busy lately. Just now getting back to the computer, but should be busy still getting things done. I figure everything will wait for me, it's not going anywhere.

I too have those attacks in the stores when shopping and since I don't want to draw attention to myself, I just grin and bear it till I can get to the car. Then I can say whatever I want and groan if I want. The hardest thing is shopping with my daughter, she can wear me out. She now has her own daughter and when we are doing the Christmas shopping lately, she has to stop to feed her and I get a break to sit down.

I just started back on plaquenil, yesterday was my first day to take it. I hope it starts giving me some relief. The 4mgs of pred. was not working well enough anymore. I'm not totally sure it is what I need, but I remember it helping before so I am going to give it a try.

hey glojer,
i will hope the plaquenil does not bother your eyes this time. fingers crossed for you. hugs to you both from rainy norcal. giggle. sunshine state my fanny! giggle!
peace,
blue
p.s. i do not shop with my daughters. fortunatly they are like me and don't like shopping for anything. giggle. we are in and out in just a few minutes.

__________________
when faced with something you cannot control peace lies in self education and adaptation to the situation.

Hi blue, my newly found (3yrs) and best friend has Lymphoma and has just finished her second round of maintenance chemo. She is actually doing pretty well considering they did not think she would make it when first discovered about 4 yrs ago. She is having surgery after the holidays for a tumor in lung. She has the best attitude towards her health, she is my idol. Just wanted to mention that as you mentioned a possibility of Lymphoma. Have felt some better the last few days. Thank goodness.

The eye doctors both know of the sjogren's and they just passed off the light sensitivity as not to worry at this time. Although they did say I had early cataracts. I think you mentioned that light sensitivity was a symptom with cataracts. I think the dry eyes is somewhat to blame as I notice that when I use a moistening drops it seems to be better. I know what you mean about the expense. I almost fainted when I saw the receipt for the drops the doctor recommended. I think $30 for eye drops should at least be a prescription or bigger than a cap on a pen. LOL I wish I could take anti-inflammatories. I think I would feel better if I could take NSAIDS but that is not possible for me because of the side effects. I would have tried to go for injections but the distance and wait time for an appointment makes it difficult to go when you really need one. We have had milder than usual weather this fall so I am hoping that maybe my flare is over for a while and the cold expected this weekend will not stir it up again.

I don't stay out shopping for long at a time. I am like a man on a mission when I go. I try to get in and out as quickly as possible and shop a lot online to avoid lines and stores and sick folk. I don't go out more than a couple of times a month and then just as need dictates. Actually I could be considered a semi-hermit... I really think the flourescent lights are what affects me so much in stores. I have noticed in restaurants that have ambient lighting that I seem to do better, or maybe it is just the walking and pushing a buggy that triggers the episodes. I know when my fibromyalgia first hit me, I could get dressed and be in the car almost to a destination and have to turn around and go home. I know I was never that way before all this mess showed up.

Well thanks again ladies for the input. It is so nice to have someone understand what we deal with daily. Hope you both have the best of holidays.

The following user gives a hug of support to goldyfm:littledarlinTN (12-18-2012)

hi goldy,
glad your friend is doing well. big cartwheels for her! if it comes to my life i will not be doing chemo. my body my choice.
i had early cataracts too. within a year i was ready for surgery. i use eye drops 6 to 8 times a day. it does help clear things up. it won't stop cataracts tho and the dryness is an issue as it feeds on the cataracts drying them even faster. my doc said insurance won't pay till you say it's an issue for you. so i went back in 2 weeks and said, it's an issue. he laughed and scheduled the surgeries. hey, i got the hint he tossed my way! worked too!
my new pillows arrived yesterday. slept so sweetly on them. love shopping with delivery. giggle.
blessings of a gentle week to you my friend. you too glosister!
peace,
blue

__________________
when faced with something you cannot control peace lies in self education and adaptation to the situation.

Hello everyone, I didn't want to just jump into the conversation but being a patient of Lupus, Fibro, and a tumor, I have been through much of the same situations. I am 30 and I am on the road to dentures. As a matter of fact, I am around the corner. The dentist and doctors say that with all my health problems that teeth is just like bone and they are not strong. They say it is common but I really hate that I am missing teeth everywhere in my mouth. UGH! I will tell you that being irritated with the light is also very common. I was told that there is nothing to that can be done about mine. I have been on prednisone for years. When hospitalized, they will give me Solu-medrol I.V. and then once I have been on that for a few days they will put me back on prednisone but a higher dosage than I came in on. Have gotten up to 60 mgs. Then they wean you as you get discharged to your normal amount. My norm is 15 mg. But I will tell you that if you don't have to go that high, don't. Long term use on high doses of Prednisone does so much damage to your organs. As if the lupus don't do enough damage. For your pain, it is so many different treatments you can try. I have done a lot over the years. Aqua therapy is pretty good for the fibro. Really not so much of an effect on the lupus. Can you tell the difference in the pain from making out the difference between it being Lupus or Fibro pain? Because I have notice that they both are two different problems and they have two different treatments as far as pain relief. For the fibro, topical creams and lotions are great and they help to a point. Also, I have had to switch meds for the fibro very frequently. I am a patient of pain management so I have multiple types of treatments. I take pain meds. But I also get injections in my back due to the severe Pluersy. It was so hard for me to breathe. My chest walls wasn't moving when I would take a deep breathe. So they give me injections to loosen me up so that I can open up a little so that I can breathe. I was on plaquenil years ago but haven't tooken it for years. Do you know anything about Benylsta. It is for lupus patients. I also take cellcept and have been on that for a little over two years. Sometimes I just want to be able to get out the bed and be able to enjoy some days. I know you all know but I can't express it enough....your stress plays a big part in all of our illnesses. Try to stay as stress free as possible. I know its easier said than done but just try and find things that can help you relax. Have a blessed day!